Tuesday, October 28, 2008

I hope I win..

I have entered a contest to try to win a $25 Amazon gift card from the fantastic Confetti by: Katteedyd! It's her first giveaway and all you have to do to enter is leave a comment on her blog and then post something on your own blog (like this!) about the contest with a link back to her. Simple and fun! Wish me luck!

Friday, October 17, 2008

So, how is Ross doing?

Thank you all for the many beautiful emails and comments sharing in my joy over Riley's exciting evaluation results. Many of you naturally asked about Ross' evaulation, and about how he doing in terms of his delays. The overall answer is that he is making fantastic progress in some areas, and having some more substantial trouble in other areas.

His gross motor scores were thrilling and showed absolutely no delay! He is still wearing a DAFO on his right leg only, and he needs to keep practicing walking up and down steps, jumping, and general proprioceptive awareness. However, he is moving around and using all of his limbs just as he should be, which is a huge accomplishment for a kiddo who has CP and who use to have extremely severe torticollis.

His fine motor skills are coming along well, also. Actually, this week he had decided that he loves puzzles and has begun completing a ton of different puzzles on his own. He also feeds himself with a spoon very well, when he isn't using it to spread various foods in his hair.

Ross' evaluation was actually a couple of weeks ago, and I have held off on posting about it, because I have also been holding off on sharing something else that has been going on with him related to his evaluation results. Originally, I hadn't planned to post about this at all, because I was in an emotional tailspin and couldn't see or breathe each time I thought about it. However, I am much more "ok" with it all now, and ready to share. Your comments and emails have always been so supportive and kind, so I feel that I can post about what has been going on.

Ross has officially been diagnosed with Pervasive Developmental Disorder (PDD) which is on the Autism Spectrum. He is having difficulties with both receptive and expressive language, auditory processing, social and interactional skills, appropriate play skills, and sensory issues. He was diagnosed in August, and started receiving wraparound therapy in September. He is also still receiving all of his Early Intervention therapies, so he has quite a lot of therapy each week. In addition, he has had three private evaluations at The Children's Institute for speech, auditory processing, and sensory issues. Each provided more information about what we can do to help Ross, and each reaffirmed that we have already done all of the right things to meet his needs.

As an Autistic Support teacher, I have spoken with many parents about their child's diagnosis of PDD, and helped them to understand what it means. I have helped them to process through the stages of being sad, confused, angry, and afraid for the future. I have stressed to them that this diagnosis simply means that their child will need more intense therapy to learn to speak and interact with others, and that it is not a limit or restriction on what they will accomplish. I have explained that they should always assume that their child will be able to do whatever they want to do, and that this diagnosis will not limit them in any way. Yes, that's what I always said as a professional.

As a mommy, this diagnosis was a blow to my heart, and to my soul. It was far easier for me to hear that both of my sons had CP, as a result of their premature births, than to hear that one of my boys had a disorder that might impair his ability to interact with the world. I spent several days crying, several nights drinking wine. I cried to my mom. I got super busy and preoccupied with setting up wraparound for Ross and focused on the practicalities of meetings and scheduling, so I didn't have to think about my emotions. Then, I cried some more. Finally, I went to the one person who could really answer my questions about what the future would bring:

Ross. That's when I realized that nothing is going to stop this little boy from doing whatever he wants to do in life. Ross is barely two years old and has already overcome so much, and with much aplomb. He survived a pregnancy that was threatened constantly, where his placenta wasn't working correctly from 9 weeks on. He was born 2 months prematurely, weighing only 2 lbs 8oz, and yet his lungs worked perfectly and he screamed for food and gained weight like a champ in the NICU. He had severe torticolllis and plagiocephaly, and had to wear a helmet for 7 long months, and yet has no residual effects. He has CP and was delayed in all gross motor areas, and is already completely caught up and walking independently, wearing just one DAFO.

This is just the next step for him, and he will climb up and over it and amaze us all.

Thursday, October 16, 2008

"He No Longer Has Any Delays"

Those were the words I was greeted with yesterday at Riley's annual Early Intervention evaluation. Riley no longer has any delays, in any area. That simple sentence literally took my breath away, as I realized that I have never been in a meeting about either of my boys and heard that they were developing completely "normally." Usually, these meetings are difficult for me, as I am forced to focus on the areas in which the boys are not progressing as they should be. Of course, we always talk about the gains they have made. However, the bulk of our discussions naturally center on their deficits and on the fact that, since birth, both of my boys have required intervention and therapy in order to learn what comes naturally for so many children. It can be grueling, and sad, and the meetings often leave me drained. Last night, though, I was absolutely elated and joyful! For the first time, Riley is meeting all of his developmental milestones exactly as he should be.

At his annual meeting last year, Riley was still commando crawling, and was not even able to crawl with his belly up off of the floor. I remember having a conversation with all of his therapists about whether or not he would be able to walk independently, and when they thought that might be. I burst into tears because I was so afraid that he was going to start to become aware that he was missing out on things when he saw Ross begin to walk, and I asked if he could try out using a walker. You may remember this post about the first time Riley used a walker in January and then there was this miracle in May. Now, in October, Riley walks completely indpendently, although he does have a slightly altered gait due to his CP. He still wears DAFO's and probably will for some time. His balance is still not great and he falls often. He has a ways to go with managing steps on his own, running, jumping, etc., but, he is a million miles away from the little boy who made me wonder if he would ever walk on his own.

Riley's language skills are right on target for his age. He says about 100 different words and he is now starting to use 2 and 3 words together once in a while. He is having a little bit of trouble pronouncing certain sounds and his speech therapist and I both believe that his CP is making it harder for him to move his mouth in certain ways, so he will still have speech therapy to address that. His fine motor skills are coming along beautifully, although he still has needs related to his CP that he will continue to address in OT.

This past year has truly been incredible for Riley, and while he does still have some challenges to face as a result of his CP, for today, I am basking in the glow of hearing "he no longer has any delays."

Tuesday, October 14, 2008

New Look....

I made some major changes to our blog, as you can see. I thought we needed some new color and some excitement around here! I changed the background, moved the sidebar over to the right side, and changed the color and size of the font of most of the text, titles and links. So, what do you think? I really want your honest feedback. Is it easy to read? Are the colors distracting, enjoyable, annoying?

Leave me a comment and let me know what you think. Please, be truthful....I can take it!

Sunday, October 5, 2008

Pumpkin Patch Pictures

This weekend, we went to Triple B Farms for our annual trip to the pumpkin patch. This was our first time visiting this farm, and we loved it! The weather was absolutely gorgeous and it wasn't crowded at all, which is always a bonus when you are trying to maneuver a double stroller around. It was a wonderful way to spend a Saturday!

When we arrived, we were greeted by Shrek because it happened to be "Visit with the Green Ogre" day. All three boys were thrilled to see him! Reid ran right over to say hello, Ross laughed and squealed at him, and Riley gave him a shy smile.

Then, we headed into the playground area and the boys had fun climbing into a barn filled with hay, going down slides, running around old tractor tires, and pretending to drive a tractor.

After that, Ross and Riley each got to ride a pony for the very first time. They both loved it and looked so handsome sitting on "Missy" who was a very sweet pony.

I also snapped this picture of Riley's profile while he was riding on the pony. Doesn't he look like a cowboy, thinking some serious cowboys thoughts as he rides?

Then, we all headed up into the pumpkin patch to run around and take tons of super cute pictures of all three boys,

Then, we got to see some goats and ducks. All of the boys were pretty amazed by the animals, and all of the goats were pretty interested in eating the boys' shoes.

It was really a beautiful day! What have you been doing to celebrate fall? Leave us a comment and let us know!